Chris J's Journey

User

Posted 01 Feb 2019 at 20:46

Your support and advice is so valued Chris, for that I thank you. It’s sometimes hard for people to allow you to do what is right for you, what ever that might be. Your support and care reminds me of the term. The wounded healer.

It’s not just what your born with,

But what you choose to bare,

It’s not how large your share is

But how much you can share,

It’s not the fights you dreamed of

But the ones you really fought

It’s not just what your given

But what you do with what you’ve got.

From a song by Si Khan

User

Posted 01 Feb 2019 at 21:15

That’s lovely Leila.

CJ, jangly jangly ... you know your own mind and what you are or are not prepared to tolerate. However, as things progress do keep in mind that avoiding treatment does not mean avoiding debilitation; your experience as a carer tells you that.

Out of interest, would you have chemo if it was offered as a stand-alone treatment? I suspect that you would refuse that also, although Bazza has surprised us all by going for it despite his fears.

Also, have they ever actually tested your ALP to judge whether there is any bone activity that is just not showing on the scans? Something to ask at the appointment perhaps?

Lyn x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Feb 2019 at 22:11

Lyn, hi , “ jangly jangly “ ? Hope that’s not a poke lol. I’ve had multiple liver profile tests including this last time. I believe that includes ALP and ALT ? Funnily enough they’ve not even picked me up on boozing but guess they can’t be bothered.

Not sure what I really want Lyn other than desperately not for life to change. It’s as though I forget the monster inside me and it’s capability , whilst at the same time waking and settling with it each 24 hours. I just see the futility of fighting it at a certain stage , although it’s not caused me pain yet. I get the debilitation totally but it’s just a case of putting it off for another day , not beating it ?? And I know I have my responsibilities to everyone , but some would argue I wasn’t much fun to be around before cancer , never mind with cancer , and certainly not with cancer and castration.

Just doing the caveman thing. Each time life changes I break a little bit more :-(

User

Posted 01 Feb 2019 at 22:23

I don't understand your comment about a poke - does jangly mean something that I don't know?

Wasn't thinking about your liver ... high ALP can indicate bone activity.

Just keep going - you are doing better than you think x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Feb 2019 at 22:40

Standard LFT’s have the parameters of ALP and ALT and AST. Sadly high ALP is both indicative of bone probs or alcohol use or both. So I guess they not sure. But I’ve got questions for sure. Even lymphodema questions. Both my knees are the size of Ugli fruit and some days I can’t walk more than 30 mins. They keep me awake all night. Other days I’m ok. Thanks anyway x I’m so busy the Jan appt then two scans then next weds have flown by.

User

Posted 02 Feb 2019 at 13:42

I wish you all the best for Wednesday, Chris. You've been through an awful lot, and you deserve some better news for a change.

Chris

User

Posted 03 Feb 2019 at 13:05

All the best for this weeks appointments, we both know what it is like when treatments do not live up to our expectations.

Thanks Chris

User

Posted 03 Feb 2019 at 14:49

Chris

I hope your appointments give some positive results and give you some time to think and do other things.

All my best wishes

Paul

User

Posted 03 Feb 2019 at 15:29

good luck for Wednesday xx

User

Posted 03 Feb 2019 at 22:21

Good luck with your appointments Chris and thank you for the support.xx

User

Posted 04 Feb 2019 at 07:08

Hope you get the result you want Wednesday Chris, i dont post on your thread often but am always rooting for you.

my sports massage guy who is also a mindfulness coach shared this poem with me and it has helped me enourmously at times (and i never read poetry usually). i would go as far to say that most people on this forum could benefit from these words at some stage or other. dont read it about not caring for others plights but more about enjoying today without worrying about tomorrow (apologies if you disagree):-

Beyond the bend in the road
There may be a well, and there may be a castle,
And there may be just more road.
I don’t know and don’t ask.
As long as I’m on the road that’s before the bend
I look only at the road before the bend,
Because the road before the bend is all I can see.
It would do me no good to look anywhere else
Or at what I can’t see.
Let’s pay attention only to where we are.
There’s only enough beauty in being here and not somewhere else.
If there are people beyond the bend in the road,
Let them worry about what’s beyond the bend in the road.
That, for them, is the road.
If we’re to arrive there, when we arrive there we’ll know.
For now we know only that we’re not there.
Here there’s just the road before the bend, and before the bend
There’s the road without any bend.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 04 Feb 2019 at 07:39

What a wonderfuk poem, Irun

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 04 Feb 2019 at 07:47

Good luck and my very best wishes Chris

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 04 Feb 2019 at 08:12

Thinking of you ,hope all goes well on Wednesday .

Thankyou Irun for the poem .

Best wishes

Debby

User

Posted 04 Feb 2019 at 12:05

Thanks all and Kevin for the poem. Feel much calmer about it all now strangely. What will be will be. Step by step , no point catastrophising I guess.

User

Posted 04 Feb 2019 at 12:57

Chris you are a very inspirational man, so helpful and encouraging. We are newbies on here but have read your posts extensively and feel like we know you. Sending good thoughts your way.

User

Posted 05 Feb 2019 at 04:26

Chris, I am sending good wishes too, and echoing what everyone else has said. You'll have the whole forum behind you at the appointment!

I haven't commented much on the forum, but your posts have taught me such a lot. I just wish I had read them soon after H was diagnosed - I might have understood what he was going through better than I did.

User

Posted 05 Feb 2019 at 08:45

Hi Chris,

I'm sending you the very best of wishes for Wednesday, I will be thinking about you.

I've only been a member here for a few months, but you have helped me in many ways after reading through your posts.

Good luck

Michaela xx

Edited by member 05 Feb 2019 at 08:46 | Reason: Not specified

User

Posted 05 Feb 2019 at 11:30

Good luck tomorrow - thanks again for the tips that have saved my sexlife!

User

Posted 06 Feb 2019 at 12:37

Scores on doors :

Bone scan clear , just wear and tear for my age !

CT scan : Prostate bed area clear. Kidney Ureta slightly thickened. Needs an eye keeping on it. Two lymph nodes back of abdomen prominent but essentially just in normal range. He believes this is where cancer and psa is being generated.

Again offered Radiotherapy to a wide area. His words ‘ potentially curative but probable relapse ‘ ! He wouldn’t be aiming at the lymph nodes. I rejected again !

So just a case of when Hormone and Chemotherapy need to start. Further CT in four months and not bothering with psa as it’s only going up at the moment. Probable treatment start then just before summer :-((

Was introduced to an advanced prostate cancer key-worker today which was significant I think. She was really nice and tried to reassure about treatment.

It’s important to remember in my personal case that my Onco is treating my individuality as well as my cancer so if his plan seems weird it is being driven by myself also.

Thank you all so much for kind positive and helpful comments.

Notification

Join the online community now.